Regan Hofmann is the editor-in-chief of POZ magazine, a publication and a website for people living with and affected by HIV/AIDS. She herself has lived with HIV since 1996, and she first publicly disclosed her HIV positive status in April 2006, appearing on POZ's cover above the words “I am no longer afraid to say I have HIV.”
Hofmann is also a board member of the Foundation for AIDS Research (amfAR) as well as many other AIDS activism groups. She has served as a U.S. delegate at the United Nations’ General Assembly’s Special Session on AIDS and has traveled internationally on behalf of the U.S. Department of State to speak about HIV/AIDS and stigma.
In 2009, Simon and Schuster recently published Hofmann’s memoir I Have Something to Tell You.
Regan Hofmann: Hi, I’m Regan Hofmann; I’m the Editor-in-Chief of POZ Magazine, and poz.com. And we are a magazine and a website for people living with and affected by HIV/AIDS. I’m a woman who’s lived with HIV since 1996, myself, and I’m an advocate and hopefully an awareness vehicle for the fact that AIDS is not over in America.
Question: Who is the "Berlin patient?"
Regan Hofmann: he first time actually in the history of the scientific examination of HIV we have seen a case where the person has theoretically had HIV eliminated from their body.
So in 2008, we actually heard about the case of the Berlin patient, an American living in Germany who was a person with leukemia who was treated with chemotherapy and then given a stem cell transplant, post-chemotherapy that involved injecting stem cells into his body that had been harvested from a person who had what is known... who had a certain genetic mutation that enabled their body to produce CD4 or T-cells that do not have the CCR5 receptors on them. The CCR5 receptors are necessary for HIV to bind to the T-cell, which is how the virus attacks the immune system. It binds the T-cell, uses its DNA and kills it in the process.
So a person with certain genetic mutations whose T-cells naturally occurs without CCR5 receptors is immune to HIV. And in the case of the Berlin patient, these stem cells were introduced to this body and they replicated within his body, and theoretically and apparently, HIV has been able to be controlled without the presence of antiretroviral medications.
So the patient is still being studied then and we are still trying to know for sure whether or not there is any virus existing in latent reservoirs or in any tissue of the brain or any other parts of his body. So it can’t be definitively called a "cure." Some will say that we actually cured someone of HIV.
So there is a lot of debate about the issue, but certainly what we’ve learned from the case of the Berlin patient has advanced cure research enormously and it is the basis for many ongoing research projects right now that are looking at the ways in which the CCR5 deletion can actually be part of the therapy that keeps people alive.
And there are many more actually, many more breakthroughs and realizations and scientific... exciting things are happening. Too many to cover in this program, but it’s a very, very pivotal time in AIDS science and a lot of what we’ve worked on for years is sort of beginning to come to fruition. So it’s a time for renewed investment and renewed attention to the research field.
Question: How optimistic are you that we are close to a major breakthrough?
Regan Hofmann: I’ve had HIV now, I’m headed into my 15th year. And I never allowed myself to have hope beyond the, you know, the impossible hope that anyone who is facing their own death has to maintain to get out of bed in the morning. But I will tell you that as someone who speaks regularly to the scientists, I do have hope. I have legitimate hope. I don’t think we’re going to have an answer tomorrow. I don’t think we’ll have a vaccine or a cure tomorrow. And when we do it won’t be a silver bullet for everyone and there will always be issues and complications around it. But I think that if I were an investor, this would be a time when I could legitimately justify putting money into this field because whoever gets into the game right now has the potential to accelerate this. And also become a hero.
Question: How did you learn and cope with the news that you were HIV positive?
Regan Hofmann: I found out I was living with HIV because I was swimming with the dolphins and I reached down, I was in my bikini, and I touched my sort of leg and I found this bump, it was a swollen lymph gland. And I went to my doctor and he didn’t think much of it and neither did I and I’d been tested for HIV frequently. You know, annual exams; I’d do my annual OB/GYN exam; I’d volunteered for Planned Parenthood; I’d gotten tested before I was married. I was really, really vigilant and aware. But by the mid-'90s, I no longer really worried about HIV, I just didn’t think it happened to women. And so I let down my guard and had unprotected sex. And then when we found this lump, the doctor asked if he could test me for HIV and I said, "Sure."
And I literally didn’t even think about it until I got a call. They asked me to come back, they said my blood work was inconclusive and I sat in my doctor's waiting room and they moved me to his private office, and gave me a Diet Coke and I was sitting in this like Lay-Z Boy Recliner watching Jerry Springer on TV actually. And the door banged open and five doctors came in, in lab coats and the first thing I thought was that I had gotten some weird tropical disease from the dolphins and I was going to be quarantined. And I never even at that moment of terror did HIV enter my brain. I just didn’t even remember that I’d been tested for it.
So when they said, “I’m sorry to tell you, and we don’t really know how to tell you, but you have HIV.” I just about died. You know? And it was so shocking and for me it was not only fear of death, fear of illness, but the stigma and what would my family say? What would my friends say? Would I ever date again? At the time, I was really, really distraught. And I only told my family. I waited about three months and then I told my mother and my father and my sister. And they were incredible. But then I didn’t really tell anybody else for 10 years until I... you know, I told a few of the people... well I told everyone that I was considering dating, which was only a few people. And I didn’t really tell anybody else until I came to POZ. And then in January, 2006, when I took the position of Editor in Chief and came out on the cover of the magazine, that was when I really told the rest of the world.
And you know, it’s been almost 15 years now and I have to say, it still takes the spit from my mouth when I say it. You know, I speak almost weekly to strangers about it and it is still so scary because of the stigma and because people I know judge me and think I’ve done something or pass value judgments on me as a person when all I did was something that most people do at one point or another, let’s hope anyway. And the virus happened to be there when I did it and it just didn’t happen to be there when someone else did it, but it doesn’t make me a bad person, but it makes me a biologically unlucky one.
So I fight to reduce the stigma because the stigma is what kills people. It’s what prevents people from getting tested. It’s what prevents people from getting the emotional support that they need that could save their life. It’s the thing that prevents people from linking to care.
Question: As someone living with HIV, how challenging is dating?
Regan Hofmann: As you can imagine, dating with HIV is not a bowl of cherries. It was harder, in some ways, when I was not disclosed publicly because of course, my first concern is, I’m going to tell this person I probably don’t know so well. My deepest darkest secret and that issue of
So it is challenging, but I will tell you this, if you want to know about someone and what their intentions are towards you, to separate things, it’s a great litmus test because I think it’s really enabled me to really understand the character of a person who I meet when I first meet them. And also understand what their intentions are with me. If they are serious about me and care about me, they’re probably likely to stick around and get some information and maybe entertain the thought of dealing with it, and if it was a casual thing, then maybe not so much. But that helps me weed out different characters and different intentions. So it’s actually a really great tool in a weird way.
Recorded November 23, 2010
Interviewed by Max Miller
Directed / Produced by Jonathan Fowler